Patient education pivotal when recommending palliative care

April 12, 2017

Patients with cancer who are educated about the benefits of palliative care are more likely to consider incorporating it into their treatment, according to results of a study by the American Psychological Association.

Researchers provided half of the patients with informational materials that explained results of a study by Temel and colleagues, published in 2010 in The New England Journal of Medicine. That study, known as the “early palliative care study,” demonstrated the beneficial effects of palliative care on survival, mood and quality of life. The other half received no intervention.

Hoerger and colleagues evaluated the effect of the educational intervention on patients’ preferences for palliative care and the likelihood that they’d accept referrals.

An analysis controlled for demographics and illness characteristics showed the majority (75%) of study participants assigned the intervention demonstrated an increased preference for palliative care. Those patients also reported being less scared about palliative care.

HemOnc Today spoke with Hoerger about the results and their potential implications.

Question: What prompted this study?

Answer: The study by Temel and colleagues received a lot of media attention, and people saw for the first time how palliative care can improve quality of life for those with very serious illnesses. It’s not just a benevolent intention — it works. People experience better quality of life, they’re less depressed, they function better physically and they may live longer. When I learned about that study, it got me really excited about palliative care and spreading that message to other people. Through Project EMPOWER, our goal was to explain to people what that study showed and exactly what palliative care is. Doing this helps make palliative care less scary, and patients become more interested in it.

Q: Can you describe how you conducted the study and what you found?

A: We conducted the experiment online, and we included patients who had any history of cancer. Some had metastatic disease and were recently diagnosed. Others were longer-term cancer survivors. We used a randomized design in which some patients received educational information about palliative care and others got no information. We asked patients to complete a survey at the start of the study to measure their attitudes and preferences toward palliative care: Did it sound scary? Did it sound effective? Did it sound like something they might want to use if their doctor recommended it? They completed the survey at the end of the study, and we could see whether sharing this educational information about palliative care led to any changes in perceptions. In the control group, as one might expect, there were no changes. In the group that received the educational information, we saw shifts in their attitudes and preferences. They saw palliative care as less scary, they viewed as effective, and they said if they were referred by their doctor, they would be more likely to go.

Q: Did the findings surprise you?

A: This is certainly what we hoped to see. What surprised us the most was the dramatic effect this had on patients. We were expecting a pretty small shift, but we observed changes four to five times larger than we were expecting. Usually, it’s hard to change people’s attitudes and beliefs, particularly about something they consider frightening.

Q: Can you describe the potential impact of these findings?

A: Clinicians often have conversations with patients who would be good candidates for palliative care but, because it is scary to a lot of people, it requires a lot of back and forth over time trying to explain what it is and how it works. Our study suggests clinicians should feel empowered to engage in these kinds of conversations because they can lead to a treatment that is effective.

Q: What advice would you give to a clinician who has a skeptical patient?

A: A good place to start is explaining to patients, very specifically, what palliative care is. Patients often think palliative care is focused exclusively on death and dying, or stopping treatment. Palliative care does grapple with those difficult topics, but it is mostly focused on helping patients with difficult side effects and symptoms cope with a serious illness. When patients know that, they become more interested in it. Clinicians also can explain to patients that there have been many important studies — including randomized clinical trials — that show people with cancer benefit from palliative care.

Q: What must happen to ensure everyone who can benefit from palliative care receives it?

A: This gets at one of the major challenges of this issue. Not every medical center has great palliative care resources. There are a couple ways to address this problem. One way is to help patients understand what palliative care is so that, if they have access to it, they will actually utilize it. Another important issue is the development of palliative care programs. There are many ways to go about this. In my opinion, there needs to be more research into different models of offering palliative care. Palliative care can be provided by a specialist, an oncologist, nurses or other members of the care team. There even are palliative care techniques that involve phone-based interventions. It would be useful for medical assistants to try to identify some novel models they can use to provide palliative care to their patients. Sometimes, the resources that you hope would be there have not been developed. Anything we can do to develop resources that will help patients deal with difficult symptoms and side effects or help them cope with their illness can really be helpful to them.

Q: What additional research needs to be done?

A: I would like to see an educational intervention like this tested at a broader level to see if this can lead more patients to use palliative care, and if it can improve their quality of life. Can we provide this information at a national level to increase the utilization of palliative care? I think the fundamental challenge facing palliative care research right now is: How do we disseminate palliative care to more people? I’m approaching this from the perspective of educating patients, but there are many other ways to answer this important question. – by Kyle Doherty

Patients with cancer who are educated about the benefits of palliative care are more likely to consider incorporating it into their treatment, according to results of a study by the American Psychological Association.

Researchers provided half of the patients with informational materials that explained results of a study by Temel and colleagues, published in 2010 in The New England Journal of Medicine. That study, known as the “early palliative care study,” demonstrated the beneficial effects of palliative care on survival, mood and quality of life. The other half received no intervention.

Hoerger and colleagues evaluated the effect of the educational intervention on patients’ preferences for palliative care and the likelihood that they’d accept referrals.

An analysis controlled for demographics and illness characteristics showed the majority (75%) of study participants assigned the intervention demonstrated an increased preference for palliative care. Those patients also reported being less scared about palliative care.

HemOnc Today spoke with Hoerger about the results and their potential implications.

Question: What prompted this study?

Answer: The study by Temel and colleagues received a lot of media attention, and people saw for the first time how palliative care can improve quality of life for those with very serious illnesses. It’s not just a benevolent intention — it works. People experience better quality of life, they’re less depressed, they function better physically and they may live longer. When I learned about that study, it got me really excited about palliative care and spreading that message to other people. Through Project EMPOWER, our goal was to explain to people what that study showed and exactly what palliative care is. Doing this helps make palliative care less scary, and patients become more interested in it.

Q: Can you describe how you conducted the study and what you found?

A: We conducted the experiment online, and we included patients who had any history of cancer. Some had metastatic disease and were recently diagnosed. Others were longer-term cancer survivors. We used a randomized design in which some patients received educational information about palliative care and others got no information. We asked patients to complete a survey at the start of the study to measure their attitudes and preferences toward palliative care: Did it sound scary? Did it sound effective? Did it sound like something they might want to use if their doctor recommended it? They completed the survey at the end of the study, and we could see whether sharing this educational information about palliative care led to any changes in perceptions. In the control group, as one might expect, there were no changes. In the group that received the educational information, we saw shifts in their attitudes and preferences. They saw palliative care as less scary, they viewed as effective, and they said if they were referred by their doctor, they would be more likely to go.

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Q: Did the findings surprise you?

A: This is certainly what we hoped to see. What surprised us the most was the dramatic effect this had on patients. We were expecting a pretty small shift, but we observed changes four to five times larger than we were expecting. Usually, it’s hard to change people’s attitudes and beliefs, particularly about something they consider frightening.

Q: Can you describe the potential impact of these findings?

A: Clinicians often have conversations with patients who would be good candidates for palliative care but, because it is scary to a lot of people, it requires a lot of back and forth over time trying to explain what it is and how it works. Our study suggests clinicians should feel empowered to engage in these kinds of conversations because they can lead to a treatment that is effective.

Q: What advice would you give to a clinician who has a skeptical patient?

A: A good place to start is explaining to patients, very specifically, what palliative care is. Patients often think palliative care is focused exclusively on death and dying, or stopping treatment. Palliative care does grapple with those difficult topics, but it is mostly focused on helping patients with difficult side effects and symptoms cope with a serious illness. When patients know that, they become more interested in it. Clinicians also can explain to patients that there have been many important studies — including randomized clinical trials — that show people with cancer benefit from palliative care.

Q: What must happen to ensure everyone who can benefit from palliative care receives it?

A: This gets at one of the major challenges of this issue. Not every medical center has great palliative care resources. There are a couple ways to address this problem. One way is to help patients understand what palliative care is so that, if they have access to it, they will actually utilize it. Another important issue is the development of palliative care programs. There are many ways to go about this. In my opinion, there needs to be more research into different models of offering palliative care. Palliative care can be provided by a specialist, an oncologist, nurses or other members of the care team. There even are palliative care techniques that involve phone-based interventions. It would be useful for medical assistants to try to identify some novel models they can use to provide palliative care to their patients. Sometimes, the resources that you hope would be there have not been developed. Anything we can do to develop resources that will help patients deal with difficult symptoms and side effects or help them cope with their illness can really be helpful to them.

PAGE BREAK

Q: What additional research needs to be done?

A: I would like to see an educational intervention like this tested at a broader level to see if this can lead more patients to use palliative care, and if it can improve their quality of life. Can we provide this information at a national level to increase the utilization of palliative care? I think the fundamental challenge facing palliative care research right now is: How do we disseminate palliative care to more people? I’m approaching this from the perspective of educating patients, but there are many other ways to answer this important question. – by Kyle Doherty